Week 9-End of Life Care

Question 1

What are views on the end of life?

Answer 1

“Dying is nothing to fear. It can be the most wonderful experience of your life. It
all depends on how you have lived.” Dr. Elizabeth Kubler-Ross- Death: The final stages of growth (1975)

“The taboo about discussing death and dying means that too many people can reach this critical point of their life unprepared, without having thought about
how or where they would like to be cared for. This in turn affects their family and carers as a poor death can lead to a traumatic bereavement, with associated
mental and physical health issues.” Healthy People, Health Lives: Our strategy for public health in England (2010)

Question 2

What is the ‘end of life’?

Answer 2

-The end of life is when someone is in the last months or years of their life.

-Research/clinicians often use the ‘surprise
question’ to figure this out; “Would I be
surprised if this patient died in the next 12
months?”

-Surprisingly, this is pretty accurate. (Moss et al. 2008; Moss et al. 2010; Moroni et al. 2014)

Question 3

What are the domains of Person-Centered coordinated care near the end of life? (The national council for palliative care)

Answer 3

“I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer[s].” (Suggests that we need to include the individual)

We must consider:
-Their goals and quality of life and death
-The people who are important to them
-Honest discussion and planning
-My physical, emotional, spiritual and practical needs
-Responsive and timely support

Question 4

What is the Prognostic Indicator Guidance (Thomas, 2011)?

Answer 4

A-Blue “All”:
-Stable from diagnosis
-Year plus prognosis

B-Green ‘Benefits’
-Unstable/advanced disease
-Months prognosis

C-Yellow ‘continuing care’
-Deteriorating
-Weeks prognosis

D-Red ‘days’
-Final days/terminal care
-Days prognosis

Navy ‘After care’ (for those who have lost them)

Question 5

What is the surprise question?

Answer 5

1. Attractive option: Strong association with the risk of death. Better predictor of death than other factors. Activates palliative care conversations/ thinking & planning
2. People who may benefit from EoLC be missed & not receive it.

Question 6

What is the Surprise Question Model (Thomas, 2011)?

Answer 6

Step 1: Ask the Surprise Question (would you be surprised if they died) yes/no/unsure

Step 2: Do they have General Indicators of decline? yes/unsure/no (if no assess regularly)

Step 3: Do they have specific clinical indicators? No (assess regularly) yes (begin GSF process)

GSF Process:
-Identify: Include the patient with the GP’s GSF palliative care register or locality register if agreed. Discuss at team meeting.

-Assess: Discuss this with patient and carers, assess needs and likely support, and record ACP discussions.

-Plan: Plan and provide proactive care using GSF to improve coordination.

Question 7

Define Palliative Care

Answer 7

-For people living with a terminal illness where a cure is no longer possible. It aims to treat or manage pain and other physical symptoms and help with psychological, social or spiritual needs. It includes caring for people who are nearing the end of life. You do not have to be dying to receive it.

-World Health Organization define it as, “the
active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount.”

Question 8

Define End of Life Care

Answer 8

End of life care is an important part of palliative care for people who are nearing the EoL. EoLC is for people in the last year of life, but this is difficult to predict. EoLC aims to help people live as well as possible and to die with dignity. It continues for as long as you need it.

-EoLC & death is something more than a physical process. Does it come at the end of a terminal illness or suddenly? Does this
matter?

Question 9

What did Dame Cicely Saunders,
Nurse, Doctor, Social Worker & Writer,
Founder of the Hospice Movement (1918-2005) say about end-of-life care?

Answer 9

‘You matter because you are you, you matter to the last moment of your life and we will do all we can, not only to let you die peacefully, but to help you live until you die’ (i.e., still worthy to have holistic support and have basic needs and wants met as the bare minimum)

Question 10

What are SOME doctor’s thoughts on EoLC (The Guardian, 2012)?

Answer 10

-An article on how doctors would choose to die where a majority chose not to stay alive with medicine and to make the most of life

-“Doctors don’t want to die, they want to live. But they know enough about modern
medicine to know it’s limits”.

-“If there is a state-of-the-art of end-of-life
care, it is this: death with dignity. As for me,
my physician has my choices. There will be no heroics, and I will go gentle into that good night”

Question 11

What should care be like to be at
the EoL (Hanratty et al., 2012)

Answer 11

“One of the most stringent tests of any welfare state is how well it works for some of the most vulnerable people”.

People have reported they want:
Comfort
Feeling unburdened
Unburdening those they love
Peace
Spirituality

Question 12

What are the typical trajectories of illness and application to a typical GP caseload? (Lynn, 2005)

Answer 12

The 3 main issues participants who were interviewed had:
-Organ failure
-Dementia
-Cancer

Cancer: Their function is not at the highest state of health with their health remaining the same even with treatment. However then they start to deteriorate as the treatment is no longer effective

Organ Failure: People’s functions start lower due to comorbidities where they get a lot worse but then a bit better with treatment (these repeats with a gradual decline overtime)

Dementia: function is low due to age with it increasing initially due to recognising that this individual needs help. However, this decreases overtime until they are bed bound and incapable

Question 13

Hearing the bad news and how this can be dealt with sensitively: What is already known about Lung Cancer from psychologists (Hanratty et al.,?)?

Answer 13

Investigated the impact of breaking the news on loved ones

• Breaking the news of a life-limiting
  illness to a patient is one of the most challenging communication tasks for doctors.
• Poor communication may have adverse
  consequences for both the patient and the clinician, but training has been shown to improve practical skills (although training is often minimal i.e., an hour)
• Previous research has focused on
  professionals’ communication skills, rather than the patients’ experiences.

Question 14

What does Henratty et al’s (?) lung cancer study adds?

Answer 14

1. Patients tend to recall the pace and clarity with which bad news was conveyed (they left the news unsure on what this meant)
2. Most doctors take a direct approach with little prior warning for the patients, this is received better if the patient knows the health professional (which is unlikely before you get diagnosed with something serious), and when they were told to bring someone with them to the appointment.
3. People with heart failure receive little information about their diagnosis or
   prognosis.
4. Minor changes to practice could improve the patient experience; greater preparation, provision of sufficient time in consultations and cautious disclosure for new patients. These may be challenging to deliver in practice.

Question 15

Are people with Long-term/chronic conditions eligible for the palliative care register?

Answer 15

-Patients with long term conditions may be eligible for inclusion on the Palliative Care Register (COPD, dementia, heart failure, cancer, stroke, kidney disease).

-Inclusion on the Palliative Care register
encourages GP’s and others to think
about whether the patient is receiving optimal best practice care. Dementia Heart Failure

Question 16

Palliative care in trauma

Answer 16

Is this an oxymoron? Is there time for PC?

-Easier to say no time, but research suggests there is a gap between how we wish to die and how many of us do die.

-Inherent conflict in values?

Question 17

Trauma Care and Palliative Care: Time to integrate the two? (Mosenthal & Murphy,?)?

Answer 17

10-15% of trauma patients who make it to the hospital die from their injuries. More people will be disabled or functionally impaired.

Demographic shift

But how to do it? (2003) American College of Surgeons article. Compassion, communication and support for the family is paramount.

How this is done has long lasting effects for grief and bereavement.

Question 18

What Ideas are there about how to do
it in an A&E department?

Answer 18

-Go into resus

-Not be left unattended

-Be told what to expect to see

-Bereavement support person present

-‘inadequacy’ of saying goodbye linked to PTSD (Schut et al., 1997)

-The manner in which you are told “Has a lifelong impact on the survivors”

Question 19

Looking at EoLC in place

Answer 19

-44.5% of people who die now do so in their usual place of residence (care home or
home) National EoLC intelligence network)

-It’s been adopted as a process measure in the UK EoL Strategy (DoH, 2008).

-“We ask too much of our hospitals, they are not a place to live and die” TED Talk 2015 (i.e., they are a place for us to get better)

Question 20

What are The most important elements of EoL hospital care as reported at the
EoL. The experience of patients & their
families? (Virdun et al., 2016)

Answer 20

1) expert care
(2) effective communication and shared decision-making
(3) respectful and compassionate care
(4) adequate environment for care
(5) family involvement
(6) financial affairs

Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows:
(1) maintenance of patient safety
(2) preparation for death (not last minute warning that they are dying)
(3) care extending to the family after patient death
(4) enabling patient choice at the end of life.

Question 21

What are the 4 Main Transitions that people wanted for EoL Care?

Answer 21

1. Prioritisation of institutional processes (rather than what the patient wanted e.g., visiting times)
2. Support across settings
3. Being heard
4. Dignity

Question 22

What are the patients experiences of Prioritization of Institutional Processes?

Answer 22

“They told me I could come home when they brought a bed in, and I said I don’t want a bed downstairs, because there isn’t room. Anyway they sent people out while I was in hospital and [my husband] showed them round. And a particular person came and said that it could be done, so eventually they brought this bed, and it was a very expensive one and it had a mattress on it which went up and down it was regulated, went up and down. Anyway when I
did come home, the nurses came, they lifted me onto this bed, . So and they said they would put me on the bed, and they had to leave me, they couldn’t take me off . That was the law, I suppose or something. They just said they had done what they were told to do, and so I would just have to stay, so that was it. Anyway [my husband] got me off. (Female, aged 80 years, lung cancer)”

Question 23

What is Prioritization of Institutional
Processes from the carer’s perspective

Answer 23

“There were capacity laws that had just come through and social workers hadn’t had training on it, so we were stuck for 9 months because they hadn’t had
training on it” (Participant 27, offspring carer of parent with stroke, resilient)

Question 24

What did patients want regarding support across settings?

Answer 24

Some of the accounts suggested that the older adults felt that they were sent out of hospital without adequate time to prepare themselves, insufficient community support in place, and little knowledge of how to access the services they required.

Being heard:
“They get very nasty when they come up here- we have got more to do than
this, you know, there is other patients. They weren’t very pleased no. If it causes embarrassment they shouldn’t do it you know, I can’t help wanting to go to the loo all the time. I think somebody has been treating me for a bladder complaint and I want to go all the time, yes.” (Female, aged 84 years, heart failure)

Question 25

What are Patient’s experiences with Dignity (Parliamentary and Health Service Ombudsman, 2015)

Answer 25

-Clear mistakes reported by the participants
were rare.

But, as older adults were placed into new and unfamiliar situations, they described care that may have lacked dignity:
-Loss of false teeth
-Being left unattended
-Sent for x rays in revealing gowns
-Discussing personal details in a crowded
room

Question 26

How does Palliative Care Budget differ (Hanratty et al., 2012)?

Answer 26

Budgets ranged from £51.83- £2329.19 pppa (per person per annual year).

Question 27

How does SES factors and EoLC specifically impact access to care?

Answer 27

-Those who have more money can afford care and create adaptations in their home OR be placed in a better care home (Valtorta & Hanratty, 2013)

-Physician house calls in the last 2
weeks of life differed by income (adjusted
for age (Barbera et al. 2010) (in some cases the difference was almost double). Is this because in affluent areas, there are more GP practises? Or is it due to other affluent areas? Or is there less illness in affluent areas meaning there is more time the GP can spend? Or is it the fact that affluent people can demand better healthcare?

Question 28

“Socio-economic inequalities in health are an unacceptable yet enduring aspect of 21st century life”

Answer 28

◦ Inequalities in life expectancy & health by social position, geographical location, ethnicity, or gender & this represents one of the most important public health challenges.

◦ Premature mortality
◦ Future trends in global mortality
◦ Social inequalities in access to services
◦ Financial barriers to end of life care
◦ Socio-economic barriers to access
◦ Delayed presentation
◦ Place of death

Question 29

What are the carer’s experience of end of life care?

Answer 29

-They were often dismissed and ignored of their experiences by the GP which was often detrimental to the patient (Lowsen et al., 2012)

-Different types of social support including instrumental and practical support meant higher levels of resilience and outcomes seen in carers (Roper et al., 2018)

Drawing on the support of the deceased care recipient:
“…she knew she was dying and she accepted it… and I am hoping I can be the same [emotional]. I don’t know, once someone tells you, you are going to die, it’s difficult I can’t, I can’t comprehend what it might mean to me, I am hoping I would go the same way, accept it, it’s part of life [emotional], it just ends and life carries on.”
(Participant 7, Brother in Law, Resilient).

Carers wanted more support than they received from family:
“(my mother) said I don’t want to (go into hospital)… her pleading with me, with her
eyes”, the participant “wasn’t brave enough to do 24 hour care on my own [emotional, information and tangible support lacking] …and I know that I couldn’t cope with that mentally [emotional and informational support lacking], emotionally I knew I couldn’t cope with that”. (P30, Offspring, HF, Resilient)

Multidimensional support from health professionals facilitates informal carer role:
“if anybody would have talked to us about that, then we might have been more, we
would have been more prepared [lack of emotional, informational and tangible support], but there was never any mention anywhere, that death might overtake all
plans that we had got. So that really was dreadful, that she had to die in the corner
of a ward, behind a curtain [lack of tangible]. I asked twice for a private ward, but they couldn’t find one.” (Participant 43, spousal carer of person with colorectal
cancer, not resilient)

Question 30

What were Health Professions views on these transitions in EoLC? (Roper et al., 2018)

Answer 30

-43 professionals were interviewed from 10
PCTS’s, four PCT provider aims, four acute
hospitals, two ambulance trusts, five social
care organisations and five hospices.

-Examined both GP’s experiences and
perceptions of their own roles in relation to
EoLC and other H&SC providers &
commissioners experiences of working with
GPs and their views about the roles GPs play.

-Findings included: working autonomously;
relationship building is key; trust;
stereotypical divisions between H&SC were
described; dominance of the medical model.

Question 31

What was the variance in support seen in Women’s cancer (Barbera et al., 2010)?

Answer 31

Those who were younger received better support in: house care, house calls, emergency room visits etc., (and there was significant variations based on regions too).

Question 32

What was found when Exploring resilience amongst bereaved male carers caring for a spouse or parent at the end of life (Roper et al.,?)?

Answer 32

Barriers:
-Poor acknowledgement of carers vital role
-No emotional support
-Poor relationships
-Prognosis not forthcoming

Facilitators:
-Material resources
-Emotional support
-Useful support
-Choice of place of care or death

“But had we have known that her life was going to be that short and she was that
poorly she could have come home, but we weren’t told, we weren’t given the option of
bringing her back home”

“probably too thick to understand it all”

“But she died here, and I was near her when she died. It’s hard yes. Sorry about this
love, it’s really hard. Because we were married 50 odd years, I miss her love, I miss her. It’s hard. It’s hard to lose a loved one, I was with my mam when she went, wasn’t as bad as that.”

Question 33

What are some Deficits in End of Life
Care?

Answer 33

8th April 2015:
-Marie Curie reported that 65% of medical professional stated that poor coordination
between different palliative care agencies left many with unmet palliative care needs.
(Marie Curie 8th April, 2015).

2015:
-The Economist Intelligence unit suggested that pain control and out of hours
services needed improvements. (The 2015
Quality of Death Index Ranking palliative care across the world)

15th December 2015:
-BBC investigation revealed failures in OOH medications (World at One)

Question 34

How can psychologists help with EoLC issues?

Answer 34

Health & Illness trajectory:
1. Before the illness strikes

2. After illness is diagnosed & treatments begin
3. During advanced illness & the dying process
4. After the death of the patient, with bereaved survivors

We can better this through:
-Education
-Training
-Research
-Developing strategy/policy

Question 35

How can psychology/psychologists
help with these issues? (Part 2)

Answer 35

1. Theories
2. Theories of communication, patient centred models of care, ‘health promoting palliative care’ quality of life, research/trials.

3 Research- this lists research organisations,
journals, current evidence.

4. “There are record numbers of us living with chronic and terminal illness and into ever older age and we are not ready or prepared for the silver tsunami” (infrastructure not ready for population shift) TED TALK, 2015.
5. Training & teaching- our training & training others- already competent and can disseminate to others.
6. Clinical roles- assessment of mood, needs, pain, psych & cog functioning; working with patients & bereaved carers; coping with emotions; in MDT’s;
   treating depression, anxiety, PTSD, etc;
   implement interventions; participation in hospital ethics committees.

Question 36

What is next?

Answer 36

-“Watching a peaceful death of a human
being reminds us of a falling star; one of a
million lights in a vast sky that flares up
for a brief moment only to disappear into
the endless night forever.”

-The challenge for the future is to ensure
that every one of the million lights
described by Kubler- Ross receives the
best care available, wherever they live,
and whatever their age, ethnic group or
medical condition.

“As long as we have our senses, even just one, we have at least the possibly of accessing what makes us feel human, connected” BJ Miller at TED 2015